Jack got a new bed - again

Several months ago, we decided it was time for Jack to have a big boy bed, so we got this:

 

He loved it.  We loved it.  He and Dasha played in there a lot.  But there was a problem.  Even though I measured and figured the bed would fit in Jack’s room (which it did) there wasn’t enough space left over.  His room is 9x9.  Small.  The “hood” of the car bed faces the closet door, which would not open but maybe halfway.  There was only a narrow strip of floor available to play on.  It didn’t work and I was bummed.  So M and I decided to take out the racecar, and put in just a regular bed.  Guess what?  It works!

Cute headboard, room to play on the rug, storage underneath in plastic boxes, aaaaaand, I can open the closet door!!  Win, win, win.  Except, did Jack like it?

This is 2 seconds after we showed him the new bed.  He climbed right in and got comfy.  So I think that means we have a win, win, win, win!

Anybody wanna buy a cute, blue, twinsize racecar bed????

Random stuff

When I left the room, I told Jack, “please use the coaster for your drink buddy”.  So he did.

Pica-shoes!

Ponytail!  (There are days in this house I can’t stand the cuteness!)

There’s so much wrong with this lol!  The most wrong part?  It was Saturday!  Not even a school day!

I told them to put everything in the bucket.  They took that literal.

Guess who went to another dance?  Aren’t they pretty?!?!

I have more pictures but they are on my new phone and I need to learn how to download them onto the computer.

We woke up to snow this morning!  But it’s Feb, right? not so unusual.  But we’ve had crazy high temps this winter so far so it was a surprise!  If Jack said “snow” once on the way to school today he said it  50 times!  He’s really talking more now – initiating conversation, telling me things he sees, adding descriptions like the color.  It’s really great.  Finally, the kid is talking! 

Heart Issues

Disclaimer - I don't know how to fix these pics! I will though!

So we found out Jack had Ds prenatally.  The next step was several ultrasounds and a fetal echocardiogram since many babies with Ds have heart issues.  (40% is what is stuck in my brain but as of right this minute I can’t back it up!)  Jack seemed great except the amniotic fluid was a little low a couple of times.  Even his heart was great.

And then he was born.  Within a few hours, it was determined that our little man had pulmonary hypertension and guess what else?  Heart issues.  Thanks a lot fetal echo (you worthless p.o.s.).  Our baby had a small to medium hole between the upper chambers of his heart (Arterial Septal Defect – ASD) and a medium to large hole between the lower chambers (Ventricular Septal Defect – VSD).  They had to be fixed.  Our goal was to get him big enough to undergo open heart surgery.  The problem was between the heart issue and the PH, he wasn’t able to stay alert enough to eat enough to grow.  So our guy had to have a feeding tube through his nose, or a ng tube.  The way he could sleep away while still getting food into his tummy.  Of course the Drs wanted to keep him in the hospital as long as possible but mommy was done with that place.  He was removed from the NICU not exactly against orders but I sure had to fight for him.  I think they were afraid I would steal him if they didn’t let me take him!  Jack removed his own ng tube a few times after we got him home, but after about a week, he was eating the required amount ON HIS OWN!

That was the end of Nov.  Less than 2 months later, our sweet baby boy underwent open heart surgery.  When the Dr called to say they were ready to set the date, I was a wreck.  I was shopping and cried right there in the store.  By the time we arrived at the hospital, I was okay.  I just wanted him fixed.  His surgery was on Tues. 

 

Wed was ugly; he was on morphine most of the day and so out of it.  He slept a few minutes at a time and would cry when he was awake  :( .  Thurs morning he was so different!  They moved him to a regular room, he was only on Tylenol, and that Sat, we went home!  4 days!

Thurs.

 

Sat., right before going home!

 

7days after open heart surgery!

Little did we know almost exactly 2 years later, the little girl that we would adopt was undergoing (in Ukraine) pretty much the exact same procedure!  The echocardiogram shows her surgery was to repair the same problems that Jack had.  Weird!  And even weirder, our cardio says it was a great fix.  Of course I don’t have photos of Dasha after her surgery and we weren’t there to hold her and whisper that it would be okay.  I hope someone was.  I am thankful every day that someone got her that repair.  But her scar looks even better than Jack’s!

Both of them now have near perfect hearts – the cardiologist says so :).  And today is the day, 5 years ago, that all of that started, Jan 23.   

So precious! Jack loves his sister :)

Cap’n Jack had a party

I found this post that I wrote (clearly) right after Jack’s birthday (at the end of Oct.) and never hit “publish”.  I contains some of the cutest pics of my baby!

Of course I didn’t plan anything ahead of time but at the very last minute we decided to invite a few nearby family members over for cake and ice cream.  We had (of course) delicious cake from Costco and balloons.  I had gotten him a few gifts so we kept those for party day and I think he was pretty happy.

Jack was good at ripping the paper off this year :)

Here Grandpa, hold my trash.

There’s one more?  Waiting……  SpongeBob!!!  Yay!

Jack blew out the candles before we finished singing so Grandma Rita sped up the song – it was the fastest version of “Happy Birthday” ever!

Precious!  Love, love, love him!  Hope this is an awesome year for you my big boy!

Horrific.

This is what all parents of children with special needs fear. This is what keeps us up at night. This is what causes our hearts to beat a little faster every time we take our kid to the Dr. We fight so hard for our children to be accepted in this world. We rejoice when we find each other because here are other parents who “get it”. They “get” that the love our kids inspire is more fierce, more pure, more protective. Not that any new momma with her baby won’t take your head off if you look at her baby cross-eyed, but we know we may have to defend our cubs way past the 18 yr old mark.

Please read this blog post written by a devastated mother. And then pray.

Almost Wordless Wednesday

Capes!!

(They were running back and forth in the kitchen watching them billow out behind them – so fun!)

What is clogging the toilet – revealed!

Ready???

Yep, it’s Scooby and the gang in the Mystery Machine!  Somebody decided it should solve the mystery of where everything goes when the potty is flushed!  (Can you see how Scooby is covering his eyes?  Cracks me up!)

Hopefully tomorrow our commode will be re-installed into the bathroom where it belongs and I can selfishly ban all potty-users from my master bath!  Tonight, it still looks like this:

 

(Andrew had friends over tonight and apparently forgot to tell them to use my bathroom instead of the hall bath.  One of the guys came up and I heard him yell from the hallway “there’s no toilet in here!!!”.  OMgosh I was rolling!  Probably not near as funny in the retelling but maybe you have to know the source.  Love ya Tony!)